If you're like me, your social media feeds are filled with families with the most beautiful stories. This micro preemie life, this cerebral palsy life, this non verbal life, this hydrocephalus life... it is so beautiful. We get the privilege of connecting across the miles and I get to see the much worked for milestones, the humor, the love. There is not a group of people I want to be connected to and with more. You are my people! I get to see the perspective that this life affords. I have no problem calling these kids our heroes because I know what they go through. Anyone, regardless of disability, that goes through what my child has, is a hero.
But this disability life is also filled with a lot of heartache. A lot of hospitalizations. Daily, one of our precious ones is having emergency surgery. One of our precious ones is fighting for their life. We have this daily reminder that life is fragile. It's not in the abstract. It's not a hallmark card. It's not a story you see on the nighty news or read about in a magazine. It's our reality. My heart breaks each time I see this in my feed. I've cried a whole lot of tears over children I have never met, but who are precious to me. I have tried different coping mechanisms. I pray. I grab ahold of Jack and hug him while I pray. I thank God for each breath he takes. I go into the kitchen to bake, to meditate on simple things. I get lost in a book. I meet a friend for coffee.
I wonder what more I can do, even with the miles. I wonder if the daily onslaught of this life, where kids don't make it out of the hospital, is a healthy place for anyone to reside that is desperately holding on to hope. I wonder about compassion fatigue, where I have a hard time summoning up concern for the suffering people in my own life, when I know my friend's child just died. I know suffering is not a race with winners, but my ability to care in a way that is meaningful, in a way I wish I could summon, gets dulled by this life. That's the hard truth.
I know human beings are very resilient. I know some of us can take more of this heartache than others. I know there are times when I feel more strong, where I can read another story, where I can send another email, where I can listen better. But other times I have to blanket myself to keep strength for the heartache in my own life. I have to distract myself. I have to get ready for the bad news that is sure to come. When you have a kid like Jack, there is always part of you waiting for the rug to be pulled out from under you. You try to stay healthy, to surround yourself with healthy and uplifting people, but if we are to be friends with literally anyone else on this planet, we open ourselves up to their problems, to their suffering.
I don't want to become hardened, but I know all of us need to protect our hearts so we are strong when the time comes. Likewise, I don't want to become emotionally unavailable to the people in my own life who need me.
I have no answers today. I realize this post is very stream of thought, with no easy ending, and I'm sorry about that. I am sorry this is not more uplifting. I tend to focus on the amazing and wonderful things about this life, but I also know that acknowledging this pain is important. I'm sure this is nothing new for the veterans of this life. I am still young, still so much to learn about suffering while remaining connected to others. Still so much to learn about disability parenting.
Jon and I had a hard conversation recently about Jack's life expectancy. I know many of you have had that conversation, too. How are we supposed to get up the next morning and dust ourselves off and get to work after a conversation like that? We just do it, right? But I guess I want to know what else you do?
I'll end there.